Planning for and Supporting the End of Life
by Family Councils Ontario
Guest Blog by Christopher Klinger and Raza Mirza, National Initiative for the Care of the Elderly (NICE; http://www.nicenet.ca)
Having the opportunity to assist a loved one through the last years of their life can be one of the most difficult (yet rewarding!) journeys for anyone of us to take. The road may be paved with (medical) emergencies, emotions, concerns toward loss of dignity and loss of control, and/or fear of abandonment/loss. Difficult decisions with regard to health and personal care, finances and estate may have to be made – and, ultimately, values and final wishes to be reflected upon.
Advance care planning (ACP) - a process of reflection and communication - is a way to structure the planning process and to ensure that the wishes and expectations of the loved one nearing the end of life are known and can be acted upon, especially in case of incapacity to consent to or refuse treatment or other (health) care. ACP follows an easy five step process of communication and expression of wishes from the loved one:
1) Think: Values, beliefs, (remaining) goals, expectations toward (health) care and medical procedures;
2) Learn: Available (health) care options/medical procedures and their consequences;
3) Determine: Substitute decision maker (SDM) or appointed Power of Attorney for Personal Care (POA) as a person that can act in case of incapacity to consent to or refuse treatment or other (health) care;
4) Communicate: Make your wishes and expectations known to your substitute decision maker (SDM)/Power of Attorney for Personal Care (POA) and your (primary) care provider(s); and
5) Review: Review your wishes and expectations regularly and communicate any changes clearly to your substitute decision maker (SDM)/Power of Attorney for Personal Care (POA) and your (primary) care provider(s).
Further information on the process steps and an Ontario-focussed work book are available from the Speak Up! Ontario website at: http://www.speakupontario.ca/.
As a holistic approach - addressing physical, psychological, social, spiritual and practical issues, and their associated expectations, needs, hopes and fears - hospice palliative care is aimed to relieve suffering and to improve the quality of living and dying according to the Canadian Hospice Palliative Care Association (CHPCA; http://www.chpca.net). It can be delivered in any setting - including long-term care - by an interdisciplinary team of health care providers, who are both knowledgeable and skilled in all aspects of this caring process. Accessible via the long-term care facility, types of hospice palliative care services that may be provided include:
• Physician and nursing services to assess and manage the progression of the illness. This includes providing pain and symptom management to improve comfort and quality of life; and
• Psychological, spiritual and bereavement support
Compassionate Care Benefits as part of Employment Insurance (EI) are available to people who have to be away from work temporarily to provide care or support to a family member who is gravely ill, and who has a significant risk of death within 26 weeks (six months). Please visit the Government of Canada’s Compassionate Care Benefits website for further details.
As the end of life draws near, some symptoms and emotions are common as the loved one’s body begins to slow down:
• Change in sleeping patterns: Longer sleeping periods and trouble awaking; → Plan your conversations and interactions and avoid overstimulation.
• Confusion and forgetfulness: Fatigue, pain, and/or the spread of disease may cause confusion and forgetfulness; → Speak in a calm and reassuring voice and remind your loved one that you are there.
• Restlessness and agitation: Grabbing and pulling at bed linens and ‘hallucinations’/referring to people who have died in the past; → Speak in a calm and reassuring voice and remind your loved one that you are there. Contact a health care provider if the ‘hallucinations’ become distressing, as medications may be given to reduce anxiety.
• Immobility and involuntary movements: Muscle twitches, involuntary (bowel) movements, and loss of reflexes in arms and/or legs may be signs that death is near; → Keep your loved one clean, dry and comfortable.
• Changes in the skin: Blue and purple markings, skin that is cold to the touch; → Keep your loved one comfortable; do not use a hot water bottle or heating pad as these can cause burns.
• Changes in breathing: Shortness of breath may develop alongside noisy breathing/gurgling; the breathing may become irregular, shallow and even stop for periods of time; → Keep your loved one comfortable, provide mouth care.
During this difficult time, as a caregiver also remember to care for yourself, to take breaks and to replenish your energies!
Further information and evidence-based tools on what to expect when someone close to you is dying (including a list of further resources), capacity and consent, pain assessment at the end-of-life, and medical assistance in dying are available from the website of the National Initiative for the Care of the Elderly (NICE). Many of the paper-based versions are also available in a number of languages (including Chinese, French, Spanish and Portuguese), and can be ordered in bulk; customization for provider organizations needs can be arranged.
